Difficulty waking up

[David R]

Hi, Just wondering if anyones experienced what I am and have any advice please. Firstly so you're aware I have bulbar onset and have totally lost speech and swallow, but I and still lucky that I am mobile although weaker than I used to be.
Basically during the day I feel fine as long as I don’t rush about and get out of breath and never really dose during the day and evening but once I go to bed I sleep quite heavily and struggle to wake up during night to go to toilet and then in the morning it takes over an hour to wake up very slowly laying in bed! I can’t hardly keep my eyes open or move about at all, its as if my brain has stopped working and I almost feel like I’m dying. My thoughts are that I’m loosing oxygen intake but it's been suggested by a doctor it might be my diaphragm muscles are getting weaker and oxygen support overnight won’t help? As they say everyone with MND is different but I was just wondering if someone else has had these sort of problems and possibly what the solutions if any were?

[matthew55]

I'm going to be fitted out with NIV this Friday so I will let you know how I get on. 😁x

[Ellie]

Sorry you feel like the Waking Dead, David.

CO2 retention can make us very groggy, even disorientated, and happens when our breathing muscles weaken preventing effective gas exchange. Your O2 Sats don't necessarily need to be low to retain CO2, but it's handy to have a pulse oximter (the fingertip monitor which measures O2 Sats) and it'd be interesting to see what your O2 reading is on waking up - those gadgets are cheap enough and widely available.

I suggest contacting your Respiratory Team or Clinic, telling them your issue and asking for an overnight pulse oximetry test. The test is done at home and just records your Sats and pulse throughout the night. Your CO2 blood level should also be measured. There is a more thorough inpatient sleep study, but not many of us are clambering to go into hospital right now and the overnight home test is usually good enough.

NIV machines used in ALS/MND do not use oxygen, just room air - in fact oxygen is usually very bad for us. I'm sorry/disturbed you were told NIV would not help you - I suggest you ask why not - it works by supporting breathing muscles and increasing the amount of CO2 we breathe out, so should indeed help you. Obvs I don't know your pulmonary function numbers but, at the very least, you should be allowed to try NIV...

Good luck!

Love Ellie.

[David R]

Thank you Ellie, I new you’d know some answers and actually since I posted the message we did manage to speak to the respiratory doctor and he arranged for my wife to pick up a pulse oximetry tester to try tonight and return tomorrow so they can consider the results. I have already got my own fingertip monitor and have been doing tests with results of 95/96 during the day and bout 92 when laying in bed. Think I’ll need the NIV, he hadn’t said no to that it was just the oxygen he said wouldn’t help and I didn’t realise they just use the room air, I thought they only used oxygen.

Pulmonary function (lung function test) I had a month ago and it was the first time it had dropped for a while, can’t remember for sure, but think it dropped to 92/93% where it had been 95% for a year or so and was 97% two years ago, think that's still ok? but I might have those figures mixed up

Do you have to sleep more upright with the NIV or can you just lay normal position (2 pillows)

Best wishes David

[David R]

Hi Matthew,

Yes, be interesting to see how you get on with the NIV, how’s the saliva now having had the treatment.
Hope you haven’t caused any fires with your blowtorch?

[matthew55]

I still have to wipe away excess some days, other times I can be dry as a bone but overall I am happier after than before. Only little ones. 😁x

[Ellie]

Do you have to sleep more upright with the NIV or can you just lay normal position (2 pillows)

That's the beauty of using NIV - you don't have to sleep half sitting up, just your normal/comfortable sleeping position.

Great that you're doing the overnight Sats test. 92% in bed suggests a NIV would benefit you.

Your PFT figures in the 90s are definitely great but don't fully correlate with CO2 retention, but tonight will show what happens at 4am.

Hope you get the results quickly.

Sleep well x

[SATRUGHNA MANI LAMICHHANE]

Ellie Dear Ellie, nice to read your comment and I am interested for niv. Feels difficult breathing, oximeter shows 90-91. I stuck in Nepal because of COVID 19. Can you please advise me the machine that you have used or good machine you know. I will tell my kids to buy one there in UK and send me to Nepal. If you know the place to buy or link to buy online, will be appreciated. Thank you

[Ellie]

Usually we are given a Nippy 4 or a Philips A40 BiPAP, but it's not as case of just buying one unfortunately as they're medical devices. I don't know what the regulations are for buying such devices in Asia.

Occasionally pre-owned devices do come up for sale on internet marketplaces, but they then need to be set up for your particular needs, and that requires testing and input from a respiratory doctor.

Wishing you all the best.
Love Ellie.

[David R]

Hi Ellie,

Just an update, I got the results after using the monitor device for two nights which were averaging 94% so the Doctor has said I don’t really need a NIV at the moment, I personally saw readings as low as 91 on the odd occasion but a lot of the time it was at 93 to 94 and coughing and drawing breaths it even hit 97 once so I suppose the average they’ve quoted is right. At the moment we have no idea why I struggle waking up some days apart from perhaps as I’m determined to keep busy I’m tiring myself too much, at least it's reassuring my Oxygen levels are not too bad at the moment.

Regards David

[Ellie]

Thanks for the update David and good that you're not deemed a NIV candidate - your lung function must be a factor. Cause for celebration indeed!

It's funny how different clinics/resp teams operate - I got my NIV on similar overnight Sats to yours, but then my lung function was lower than yours at the time.

It is odd that you find waking up takes time - have you started taking new meds?

Love Ellie.

[David R]

Hi Ellie,

I haven’t changed any meds for about a year now so don’t think its any of them.

Regards David